Dance with me

Earlier this year a research paper was published that reports shocking rates of Post-Traumatic Stress and mental health problems among autistic people who have undergone ABA.

ABA is Applied Behaviour Analysis, an intervention typically used in childhood to modify behaviour. It derives from the work of Ole Ivar Lovaas in the 1960s in which he experimented on children, subjecting them to electric shocks and other so-called aversives to force them to comply with his directions.

Now, ABA has moved on from those days when children were openly tortured and abused, and contemporary practitioners can tell you how they no longer rely on aversives or otherwise punish children, but instead use systems that are rewards-based.

There is considerable debate within autistic communities about the merits and drawbacks of various therapies, and ABA is probably at the top of the list for the sheer amount that has been written about it. So what am I doing writing more about it? What can I possible add?

The answer is simple. I have been going through research that investigates ABA and its related behavioural therapies and I noticed one glaring omission. Almost every paper focuses on demonstrating the effectiveness of the interventions in modifying behaviour. But with a single exception they have never investigated whether there are any long term effects on mental health.

Until Henny Kupferstein published her paperEvidence of increased PTSD symptoms in autistics exposed to applied behavior analysis in the journal Advances in Autism earlier this year there was not a single published report that I have been able to find that even asked the question of whether these interventions are safe in the long term.

Why has this omission not been recognised before? A 2000 paper by Laura Schriebman, Intensive behavioral/psychoeducational treatments for Autism: Research needs and futuredirections, published in Journal of Autism and Developmental Disorders, identifies the lack of research into long term impact and is cited in a paper from 2016 that says,

There is limited literature on the long term effects of the use of ABA interventions on young children and their progression into adulthood. Sallows and Graupner (2005) demonstrated the positive impacts that ABA based early intensive behavioral interventions (EIBI) have on the development of young children over four consecutive years while Healy, O’Conner, Leader, and Kenny (2008) used similar interventions over the course of three years. EIBI interventions are built upon the pioneering work of Ole Ivar Lovaas at the University of California Los Angeles in the 1960’s. Researchers such as Schreibman (2000) have called for specific research in the core ABA areas of generality and maintenance of behaviors in an effort to bolster the long term impact of ABA based therapies.

So this lack of knowledge about long term impact has long been recognised. This all points to a collective failure of their responsibility of care among behavioural therapy practitioners and researchers: they have failed to demonstrate that these therapies are safe, or even that the long term safety has been considered!

These interventions are most often used on some of the most vulnerable in society: our children, autistic children. Autistic people have been reporting long term problems for years that they trace back to ABA and related interventions. With Henny Kupferstein’s research paper now, we should be ringing the alarm bells and demanding action.

If this was a pharmacological rather than psychological treatment it would have had to go through clinical trials to demonstrate an acceptable level of safety, and its approval would be subject to review if evidence of problems came to light later on.

Just because it doesn’t involve a drug doesn’t mean it can’t be harmful. Psychological interventions need to be subjected to the same scrutiny as medications. If half of the people prescribed Ritalin, for example, showed symptoms of post-traumatic stress some years later, would you not expect that to be investigated?

So what is different with ABA and its related family of behavioural interventions that include EIBI (Early Intensive Behavioural Intervention), IBI and PBS (Positive Behaviour Support)? Why are they not being investigated given the many reports of mental health problems in later life?

There is a lot of money involved in these behavioural interventions. Is that enough reason to overlook reports of problems? These interventions carry a hidden cost, and it’s paid with the lives of our children.

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20 thoughts on “The Hidden Cost of Behaviourist Therapies”

I think it is really important that there is good evidence of long term outcomes and any detrimental effects. Whilst the much cited paper on PTSD is a start, it is based on an internet survey using retrospective self report from a biased self-selected sample (majority female). Better designed long term follow up studies using proper sampling and verified assessment are needed.

Yes, I believe that paper’s real value lies in identifying an area of real concern. There have been no long-term follow up studies looking at any aspects of ABA, so its effectiveness is as much in question as its safety.

I’m not sure how one could actually do a humane study without relying entirely on retrospective reporting, and considering that one of the things autistic people are taught in behaviorist therapies is how to suppress emotions and emotional responses that the general public (carers included) find annoying or inconvenient, I wouldn’t necessarily trust anything BUT self-reporting. How would you go about designing a better study?

You’re not wrong, but sadly, behaviorist therapies for autism aren’t for OUR benefit; they’re for the benefit of the poor, beleaguered caretakers whose lives we ruin by existing. It’s not until the world at large starts caring about autistic people as people instead of as obstacles for our neurotypical relatives to overcome that we’re going to stop being told to hide our autism – and that includes hiding our emotions.

Thank you for this article!
Due to the increasing evidence of harm and trauma that can be caused by behavioural interventions, it is inappropriate for anyone to continue dismiss autistic voices on this matter. The time has come for the field of behaviour analysis to take responsibility and accountability and to divert resources from growing their market to look into for who, when and why ABA harms. It is over 3 decades since Ole I. Lovaas’ highly questionable research, however it is this which is still the main evidence for ABA programmes. How can this field, which is also not a recognised profession, be allowed to continue to manipulate young autistic minds, children as young as 18 months, for up to 40 hours a week when there is no knowledge about for who, when and why ABA can harm or help. Autistic children should have the same rights as non-autistic children, to grow up feeling accepted, understood and supported for who they are, not being rewarded for how neurotypical they act and their level of blind compliance.

All therapies carry risks and benefits. I certainly believe that it’s worthwhile to consider both sides of the coin, but it’s important to note that this type of therapy has also been proven to have great benefit for many children on the spectrum. You can’t make conclusions on safety without research that uses an experimental design, which includes a control group. When we are able to draw valid conclusions about what percentage of individuals may have experienced long-term negative effects as compared to those who have not, as well as control for confounding variables, and prove causation as opposed to just correlation, then we can realistically speak to the safety of ABA.

I don’t agree that this type of therapy has “been proven to have great benefit”. A 2017 Cochrane review found there is “very low to low quality evidence” to support any claims of benefits from such interventions. Other research has shown similar development of children whether or not they received therapy. The main benefit of behavioural therapies is to the bank balances of providers.

My 4 year old son, with high functioning autism has been under ABA therapy for last 2 years. Half of the time of 2 hours sessions he has been crying and begging and calling mommy and daddy to help him. One day I came back from work, when my son had a 10 min break, and the moment he saw me, he run to me, jumped to hug me and to hold him in my arms, and he would not let go. The moment therapist came out of the room, my son squeezed into me as hard as he could, and instantly with begging look in his eyes, started to cry. That was the moment I knew it is torture for him not a therapy. Soon after we asked case manager PHD psychologist to change method of enforcing anything from our son. The most my son learned was at his preschool playing with peers and teachers. I do not think he got anything positive from the ABA (torture) therapy.

I Have a son that is severe on the spectrum and just recently became a tech in ABA (about a month ago) some of the approached I am being asked to use make me cringe. It’s almost inhumane. I don’t see myself staying in the field. I find myself trying to be a buffer between the child and the therapy itself. I’m left almost speechless.

I think I’ve missed something. My daughter, age 9, has been enrolled in ABA for about 5 months. She averages about 2 hours a week, and she loves her sessions. Her providers are helping her learn how to express her needs in socially acceptable ways (read: “I need help” instead of throwing a tantrum or making strange animal sounds), how to self-soothe rather than lashing out against her younger brother, and gradually how to deal with unpleasantries that are part of everyday life, like brushing your teeth even when you don’t want to, or losing a board game, or doing household chores. I haven’t observed anything painful or demeaning about the treatment, or anything that shames her or seems designed to change who she is. What am I missing?

Thank you for sharing your experience with your daughter, Laura. Learning skills that reduce the difficulties faced in day-to-day life is important and beneficial, and I have no issue with techniques and approaches that are compatible with the child’s welfare.

There is some muddying of the waters concerning ABA because in many areas that is the only type of therapy that funding is available for, so therapies that strictly speaking are not ABA get labelled as such to qualify.

ABA as a therapy that derives from the work of Lovaas has zero evidence for its effectiveness and safety: there are studies that show it fails to provide any benefit when compared against no therapeutic interventions at all. In other words, autistic children typically learn these skills anyway as part of their normal development with influences from parents, teachers and peers: it is simply that development in some areas can take longer than for a non-autistic child.

In many cases, the goal of an ABA practitioner is to train the child to mimic non-autistic behaviour, a goal that does nothing to benefit the child: it is primarily this approach that has been linked to mental health problems later in life, and which gives rise to the safety concerns I raised in this article.

Here is another problem with the use of ABA for teaching such life skills- if it isn’t observable, the provider is practicing “outside their scope.” That means, the ABA provider is seeing non-compliance when brushing teeth as a behavioral issue (not sensory or medical) and treating it as such. So, will your child learn to brush their teeth? Maybe. But what if their refusal is due to pain or a legitimate medical problem? They are now learning to simply comply, and the underlying issue will be ignored by all of the trusted adults in their life. They are learning to mask, because they know that is what is expected of them. So many “behaviors” are communicating a real problem for the child, but those problems aren’t “observable.” Thus, they are outside the scope of practice. Tooth brushing is just one of many problematic “skills” being taught by ABA providers when children show non-compliance.